“FEAR is an acronym in the English language for ‘False Evidence Appearing Real.'”~ Neale Donald Walsch

Grant’s army-green duffel bag was bulging at the seams and his cornstarch for the week was meticulously measured into coin envelopes and tucked into a Clark’s show box.  I always save Clark’s shoe boxes for this purpose.  They are so sturdy….the shoes and the box.  Somehow organizing these envelopes in neat rows made me feel better about allowing Grant to go to Camp Quinapoxet alone.  His brothers had paved the way, but I am not sure if that was a good thing. They were all good fire builders and let’s just say… they were creative.  But that is another story.

I helped carry a few odds and ends into the camp site where all the tents were on platforms.  The air smelled like only a woods can in New England in July.  The heat of the sun drew the smell of the pine needles into the air and the sticks and twigs snapped under my hiking boots.   The scout master’s living quarters were situated in the middle of the site.  No surprise, but Grant was assigned the tent next to the Scoutmaster.

At home I had been working diligently helping Grant to be independent with his night time regime. The scoutmasters wanted to circumvent any issues that could be avoided, so they took the responsibility for giving Grant his cornstarch at night. I had to acquiesce, because they were in charge of over twenty boys and avoiding a possible life threatening situation was key.  I felt guilty about someone else having to get up in the middle of the night to do what I did every night of the week at 6 pm, 9 pm, 1 am and 5 am.

The trip home was quiet and took much longer than the trip there. I prayed everything would go well and that I would use the opportunity to get some much needed sleep.  Dropping a child off at camp when they have glycogen storage disease requires faith and trust.

Just recently, 16 years after this event, the scoutmaster to whom I entrusted my son told me this story.  He said he set his alarm carefully every evening.  One night he woke up without the alarm.  He opened his eyes and there was a bright blue light illuminating the tent walls from the exterior that appeared to be the light of day.  He was immediately panicked.  He did not remember giving Grant cornstarch in the middle of the night!  His initial thought was ” Good Lord, I’ve killed Grant!”  He jumped out of his sleeping bag, threw open the flap, and then realized that the blue light was the glow of a newly-installed bug zapper hanging just outside.  It was still the middle of the night, Grant was not yet due for his cornstarch, and he hadn’t killed him after all.

Many of my friends who have been caregivers over the years have expressed fear, anxiety and near misses when tending my children with GSD. They “lived” in my world for a few days.   I plan to dedicate a whole section in this blog to caregivers stories…and sometimes nightmares.  God bless them everyone.

Lesson Leaned: Things are not always what they seem.